What is working for you?

[ginger65]

Hi. I have a lifetime history of having a "trash can for a stomach" since I was 12. I am now 52. I was diagnosed with Fibromyalgia, have had fistulas, colon polyps, IBS, and Spastic Colon throughout the years. Yesterday I heard the words "Inflamed Lymph Node, 2 Cysts on my liver, and a lesion on my spleen...all indications of a history of a Crohn's attack at some point" she said. I don't feel great, but not any worse than I've felt before. I am learning that I have been having "flare-ups". I have so many questions about diet as I have previously cut out dairy, bread, and acidic foods for the most part. Today, I was told to eat only dead food and 6 small meals a day. Does any of this sound familiar to anyone? I am electing to approach this with food restrictions and vitamins. Anyone else? Also, what has worked for you in the past?
Thank you for any useful and encouraging responses as I am single and really haven't advertised all of this to my friends. My closest ones know, but that is all. Nobody has this in my circle.
Thank you,
Ginger

 

[ronroush7]

Welcome. About the 6 small meals a day, my doctor about told me, after having a small section of my stomach removed, to have smaller meals and more often. I might keep a diary of foods you eat and how your body reacts to them.

 

[Jennifer]

Hi ginger65 and welcome to the forum!

6 small meals a day is pretty common. Everyone is different as far as diet goes so you'll need to find out what works for you by trying things out little by little. For me during a flare I tend to go on the BRAT (bananas, rice, applesauce and toast) diet or an all liquid diet if it's really bad. For me those tend to help. Other people can't handle that stuff or find a liquid diet too difficult (your doctor is always made aware when you're on just liquids btw).

Aside from diet which I mainly only tinker with during a flare or if I have symptoms of a partial blockage from my previous resection, I take medication daily. I think maintenance medication is vital to controlling IBD. There are many different kinds out there and just like with diets, you may have to find which works best for you by trying different ones. For me Mercaptopurine works which is an immune suppressant.

Have you actually been diagnosed with Crohn's or did an imaging test you had done recently generally point in that direction? You'll need to have a colonoscopy with biopsies to diagnose Crohn's. You must of heard in the news recently how a woman had been diagnosed with Crohn's just to find a couple years later that it was just part of a ketchup packet stuck in her intestines. I'm not sure who missed that in imaging nor who diagnosed Crohn's just by symptoms alone. There's very strict criteria you have to meet for a Crohn's diagnosis. Many people on the forum are still undiagnosed because they don't meet those criteria even if their symptoms point to IBD.

I would continue testing and get a concrete diagnosis before I tried treating anything with diet alone. Crohn's can mimic so many other illnesses and diseases so it's best to know what it is for sure if you haven't had Crohn's confirmed through biopsy yet. Keep us posted.